Movie Stars and Sensuous Scars

Movie Stars and Sensuous Scars: Essays on the Journey from Disability Shame to Disability Pride is a combination of autobiographical stories about living with a disability, scholarly essays about disability rights and disability culture, and profiles of disability rights leaders, in the context of a world-wide disability rights movement by Steven E. Brown, Ph.D., Co-Founder, Institute on Disability Culture, and Resident Scholar, Center on Disability Studies at the University of Hawai'i, who is an internationally-renowned disability rights activist. Brown is a historian and award-winning poet, Brown's written five books about disability rights and culture and six books of poetry.

Steven E. Brown, Ph.D., has been writing about his life since he was an adolescent. He's also been contemplating how his life and the disability rights movement, in which he's been an active participant, fit into the larger world.

Brown wrote the oldest essay in Movie Stars and Sensuouis Scars, "Hidden Treasure," when he was seventeen. The most recent, "A Healing Journey," the author composed in his late forties.

Brown describes himself as "having spent the past thirty years of my life becoming. In my early twenties, I became a historian, earning a doctoral degree. In my early thirties, I became an activist, working in the disability rights movement. In my early forties, I became a promoter, convinced that the world needed to understand the idea of disability culture. In my early fifties, I became interested in healing. I'm still learning what that entails."

The book is divided into six sections. They are: Personal Stories; The Disability Rights Movement; Disability Culture; Profiles; Disability Rights and Culture; and Endings and Beginnings.

Personal Stories start the volume because Brown believes it's difficult to understand how he arrived at later views and opinions without knowing how his history shaped him. The Disability Rights Movement follows because as he grew into young adulthood, he became an active participant and thinker about that cause. This work led to a belief in Disability Culture, the next section. Along the way, Brown's met many fascinating people and had a chance to write about a few of them. These essays are in the Profiles section. In the decade of the 1990s
Brown had a chance to travel, both in the United States and internationally. Those experiences are discussed in Disability Rights and Culture. Finally, he concludes with another personal essay. This one combines disability rights, personal stories, and his newfound interest in healing. It's labeled Endings and Beginnings.

Movie Stars and Sensuous Scars is a collection of personal reminiscences, contemplations, historical documentation, poems, and reflections of a life lived, like most of ours are, that is both scarred and sensual.

INTRODUCTION: GAUCHER DISEASE: A PERSONAL HISTORY
HIDDEN TREASURE
HE KNOWS PAIN, LIKE ME

THE WALKOUT
THE TRUTH ABOUT TELETHON
GENTLE, ANGRY PEOPLE
AMERICAN APARTHEID
HOOKED ON SYMPTOMS: DRUG ABUSE FROM ADISABILITY PERSPECTIVE
THE SCIENTIST AND THE FROG: A TALE OF TWO CREATURES IN THE FORM OF AN EXPERIMENTAL FABLE

I WAS BORN (IN A HOSPITAL BED)-WHEN I WAS
THIRTY-ONE YEARS OLD
CREATING A DISABILITY MYTHOLOGY
WE ARE WHO WE ARE…SO WHO ARE WE?
DIS-ING DEFINITIONS AN EPIPHANY ABOUT THE
MYTHS OF (DIS)ABILITIES
DEVIANTS, INVALIDS, AND ANTHROPOLOGISTS:
CROSS-CULTURAL PERSPECTIVES ON CONDITIONS
OF DISABILITY IN ONE ACADEMIC DISCIPLINE: A
REVIEW OF DISABILITY AND CULTURE
"OH, DON'T YOU ENVY US OUR PRIVILEGED LIVES?" A
REVIEW OF THE DISABILITY CULTURE MOVEMENT

DEATH AND LIFE
MY BEST FRIEND
MOVIE STARS AND SENSUOUS SCARS
THE CURB RAMPS OF KALAMAZOO: DISCOVERING
OUR UNRECORDED HISTORY
IN FREEDOM, FRANK
ZONA AND ED ROBERTS: TWENTIETH CENTURY
PIONEERS

RETHINKING THE DISABILITY AGENDA
SOME REFLECTIONS ON THE ADA
SHARED WORLD CONFERENCE III: GLIMPSES OF
HUNGARIAN ACTIVISM
DISABILITY CULTURE IN GERMANY

from INTRODUCTION: GAUCHER DISEASE: A PERSONAL HISTORY, page 4

I could expect that two or three times annually, usually coinciding with the changing weather patterns of spring and fall, I would endure episodes of severe pain in one of my knees, beginning with a slight swelling which would escalate until my knee looked like a softball, preventing any weight-bearing on that leg, and causing constant excruciating pain. These episodes usually lasted about two
weeks before slowly subsiding until the last remaining vestiges of what we then called "attacks," but now label bone crises, disappeared.
At the age of fifteen I felt infrequent but consistent sharp pain in the groin area of my left hip. After an entire summer of visits to my doctor and no clues about the origin of this mysterious pain, an X-ray detected a healing, hairline, hip fracture.
My doctor warned me I could never again jump or run without risking
another fracture. This devastated me.

from THE WALKOUT, page 25

I began my first day at the Independent Living Project (ILP) planning to study how to be an "independent living specialist," my new title. I intended to supervise the peer counseling and skills training programs. I hoped to transition into my new job. I knew I had lots to learn. I could never have predicted how pivotal that initial Monday would be. I had no clue my first day could be so intense or confrontational.

from AMERICAN APARTHEID, page 42

Existing as an individual with a disability in this country is equivalent to encountering daily barriers. No other label than American apartheid accurately describes this pervasive, continual, and deliberate segregation.

from THE CURB RAMPS OF KALAMAZOO: DISCOVERING OUR
UNRECORDED HISTORY, page 124

"Friday, April 25th, 1997, a ceremony in downtown Berkeley commemorated the 25th anniversary of the first curb ramp for the disabled. 'It's the slab of concrete heard round the world,' according to Gerald Baptiste, Associate Director of Berkeley's Center for Independent Living, noting the curb ramp is believed to be
the predecessor of millions of similar ramps that have been built throughout the world to enable wheelchair users to utilize sidewalks, businesses, parks and other public facilities."
When I read the preceding e-mail message in the spring of 1997, I had only recently become aware that this bit of lore from disability rights mythology was myth indeed.

from ZONA AND ED ROBERTS: TWENTIETH CENTURY
PIONEERS, page 156

Ed's legacy may live on most fundamentally in the individuals he touched. At a memorial service held at WID shortly after Ed's death, a woman related the story of how her parents had moved to the United States from the Far East after she became disabled. She ended up in a hospital in the Bay Area wishing she were dead. When asked if she wanted anything she made a request to meet Ed. He visited.
While there she related her story and he began to cry. When she saw his tears that he could not wipe from his face she realized she possessed physical capabilities he did not. Yet he was a powerful, happy man in his huge, motorized wheelchair, breathing with the aid of a respirator. She wondered why she was lying in a hospital bed. She got up. She has since become a well-known artist in the Bay Area.

from A HEALING JOURNEY, page 181-182

Once I counted. Literally. The minutes to move. Lying to sitting. Sitting to standing. Standing to moving. Over half-an-hour.
I am not making this up.
I am not attributing to memory something that did not happen.
I am writing this because so few do. But I am not the only one. There are others.
My pain is not my pain alone. My pain is not all pain.
I lie. I decide to get up. To go to the
bathroom. To go to bed. To get something to eat.
To see another room. To do something. I decide to
get up.
Not I get up. No, this is not an unconscious movement.
This is very conscious, deliberate. It must be. It will
happen no other way.
I decide to get up.
I decide to get up.
I decide to get up.
Okay, I have decided to get up.
I move. I scream. I hurt. Maybe I won't get up. I am
paralyzed with pain.
Okay, I have decided to get up.
Okay, I have decided to get up.
Okay, I have decided to get up.
I move.
I scream. I hurt. I will get up. I will get up. I will get up.

“History buffs or disabled people interested in learning more about their community history will be interested in this book. Students of disability studies will also benefit from the mixed stories of individual and political, autobiographical and biographical, local and national narratives.

“While this very accessible, readable set of stories will be appealing to many readers, those who have a more advanced conception of disability studies may find that the book lacks a new level of analysis. However, it adds significantly to what we know about Ed and Zona Roberts and their role in disability history. It shares personal and intimate tales of dealing with disability and the organizations that serve people with disabilities.

“The intimate stories are the most enticing. For example, when Steven Brown’s partner Lillian cannot move temporarily, they both wait. He writes, “This dissonance impacts every arena of our lives. Sometimes, more often as we age, sexual contact presents difficulties. Which is unfortunate because Lillian is one of the sexiest people I know and easily the most compelling, desirable lover I’ve had.”

“The book will not scare off novice disability scholars. From the beginning through the end there are short and medium length stories that vary from describing the author’s experience with disability to his essays on social commentary and legal progress. He brings together many issues in his discussion of the progress of the disability rights model and the growth of disability culture. Students and history buffs will enjoy the details and discussion. There are a few chapters that address disability issues in other countries and that tie back to the ADA or the Independent Living movement in the US.

“It is reasonably priced and a positive contribution to the history of the disability rights movement and disability culture in the United States of America."

Tanis Doe
Review of Disability Studies: An International Journal
Volume 1, Issue 1, 2004, pp. 168-69

"Disability culture is at the heart and soul of the disability movement, and in Steve Brown's writings we see that culture shining in all its glory. "

“Movie Stars and Sensuous Scars is a powerful book. I strongly relate to Steve's writing and ideas. The writing is clear and flows well. The ideas are beautifully radical. He gives true insight into disability and people with disabilities. His is a voice demanding to be heard.”

"Steve Brown takes us on a profound journey of his many steps, the many turnings of the wheels that have borne him through his life to the present moment. His shock, his anger, his bitterness, and, ultimately, his courage in the face of adversity, not only educate but remind us of his fine humanity as well as our own. His advocacy doesn't preach but teaches. With words describing his life and the lives of those close to him, he opens a wide door through which any who can read or care to grow can pass."

STEVEN E. BROWN, Ph.D. Co-Founder, Institute on Disability Culture, and Resident Scholar at the Center on Disability Studies at the University of Hawai'i earned a doctorate in history in 1981 at the University of Oklahoma. When discrimination detoured a career in history, he expanded his activities with a local disability rights group, and set the stage for two decades of work within the disability rights movement.

Brown, and his wife and partner, Lillian Gonzales Brown, realized their dream to establish the not-for-profit Institute on Disability Culture (IDC) in early 1994, shortly after moving to southern New Mexico. In summer 2002 they re-located to Honolulu, Hawai'i where they both currently serve as Resident Scholars at the University of Hawaii's Center on Disability Studies.

Brown's publications include dozens of articles and the books Independent Living: Theory and Practice, which has been translated into several languages; Investigating a Culture Of Disability: Final Report, the result of a prestigious Switzer Fellowship from the National Institute on Disability Rehabilitation and Research of the Department of Education, the first funding of its type for research into the field of Disability Culture; A Celebration Of Diversity: An Annotated Bibliography About Disability Culture, Second Edition; Celebrating Passion, Relentlessness, and Vision:: The Manifesto Editorials. Also an award-winning poet, Brown has published six books of poetry, Dragonflies In Paradise: An Activist's Partial Poetic Autobiography; The Goddess Approaches Fifty; Journey Home; Love Into Forever: A Tribute To Martyrs, Heroes, Friends, And Colleagues; Pain, Plain--And Fancy Rappings: Poetry from the Disability Culture; and Voyages: Life Journeys.

In recent years, Brown has conducted writing workshops and residencies with groups of all ages, written a manuscript for a children's biography about disability rights pioneer Ed Roberts, distributed a monthly online newsletter, the MANIFESTO, published articles about disability culture and disability rights in a variety of publications, and conducted trainings throughout the United States and Europe on a variety of disability related subjects.